grace in the rubble

I'm adding a new blog! I've decided to try two blogs, one dedicated to living  a full and joyful life with chronic health problems, (that's this one, the little things, at barbaramarincelthelittlethings.blogspot.com and this address will not change) and one to focus on the spiritual journey. So I am headed over to wordpress.com to begin my spiritual exploration at graceintherubble.wordpress.com. I've come to feel that I'm trying to do too much with this blog, and not really doing justice to any of the subjects I feel passionate about.

So I hope you will keep reading about both of my journeys! This blog will also be focusing more on our adoption journey. As we've discovered, it's not easy to adopt when one has chronic health issues, no matter how many letters of recommendation I get from doctors certifying that I'm able to parent a young child. And of course 2012 was jam-packed with medical problems demanding attention, so we were forced to delay our adoption journey for an entire year. Still, I continue to have faith in the Red Thread!

I will leave you today with our Christmas picture, 2012. We all look as though we have giant heads because it is a self-portrait, taken by me; we discovered my short arms are not an asset for self-portraits!

Big heads and red faces--Minnesota winters are cold outside! You will notice the dominance of Fiona, which is suitably proportionate to her role in our family.

me and my neck

I haven't written here since September? To be honest, this entire semester has gone by in a blur. Really, I ought to say non-semester, since I've been on medical leave, yet again. This time, it's mostly my neck. Apparently, my facet nerves are damaged and inflamed as a result of my car accident this summer, so in addition to the physical therapy I've already had, I need to have an outpatient surgical procedure called a radiofrequency rhizotomy. At least it sounds impressive, eh? (And of course, now the weather is being its usual crazy Minnesota self, so my fibromyalgia is kicking in.)



This is a partial description of the procedure from SpineUniverse.com:

Once you are ready, you will be given an IV with a mild sedative to keep you comfortable but awake during the procedure. A local anesthetic will be used to numb the area where the injection is to be done. An x-ray machine is then used to guide the exact placement of the needle/electrode. Once the needle is injected, a mild electrical current is used to stimulate the nerve and confirm its exact location. You may feel slight pressure or tingling during this part of the procedure. Then the electrode is heated to deaden the sensory nerves. When the procedure is completed, the needle is removed and the injection site is bandaged.

In fact, the nerves are cauterized (as in burnt, yes) so they can no longer transmit pain signals to the brain. It's obviously a much longer-lasting fix than just having a cortisone shot, which was another option.  In my case, the doctor will cauterized my facet nerves from C-4 to C-7 (In normal English, that means four facet nerves in my cervical spine, or neck.) Apparently the procedure itself isn't that bad, because they are going to keep me so sedated I won't even remember the surgery! It's the healing that is going to be the tricky part. It can be fairly agonizing, I've gathered, because my nerves will be raw until scar tissue has a chance to form, which takes at least a week. And it can take up to four weeks for the results from the procedure to become apparent. Ugh. And I'm having it done only five days before Christmas!


I was quite busy feeling sorry for myself the other day when my friend Nadine pointed out how lucky I was. Lucky that I have a problem that medical science can actually fix! Imagine the days not so long ago when people just had to put up with this sort of (at times excruciating) neck pain. I remember thinking about that years ago, when I was seventeen years old and had my two scoliosis surgeries. I have never, ever, forgotten the first time I saw myself after the surgery, reflected in the window at the end of the hall. Even wrapped up in a cheesy hospital robe, I could see that my spine was straight. For the first time in years. I actually looked like all of the other girls I knew. And boy, did the tears ever flow. I still have quite a bit of back pain from the surgeries, and have degenerative disk disease and osteoarthritis in my cervical spine as a result, but I have never once been sorry I had those surgeries.

 Sure, life would be easier without the surgeries and the fibromylagia etc., etc., but I am not powerless in the face of them. And I am so grateful to all those in medical research who care enough to invent procedures and medications that either cure what I have, or enable me to cope better. George is taking a couple of days off work to care for me and then my birthmom is coming over for a day, and she's promised to arrive bearing her delicious manicotti! And I have Fiona to take care of me, as she does so well, lots of books (piled everywhere in our bedroom and downloaded onto my Kindle), and podcasts on my iPod I've been meaning to catch up on. And the house is nice and cozy, decorated for Christmas. Plus I already have several visitors lined up, whether Fiona likes it or not! So in the end, when I think about, it looks as though there will be many benefits beyond the obvious medical ones.

PS Prayers welcomed! As are lavish get-well gifts, huge flower bouquets, the works!

Image of spine from:

http://www.backandjointpain.com/injection-procedures/cervical-spine/rhizotomy

you know you have fibromyalgia when...

 This list comes courtesy of the Fibromyalgia Network. I was thrilled to find this--it totally captures most of my days lately!!! If you have fibro too, see if you can relate!! (It also explains why I have so sorely neglected you, my poor little blog...)


 You Know You Have Fibro When...

• your 80-year-old mother phones to tell you she has already done her shopping, washing, daily emails, and been to the post office, but you're still trying to get washed and dressed!
• you get lost in your own house (and it's only a small three-bed semi).
• you wake up in the middle of the might and grab a Hershey's kiss on the way back from the bathroom and wake up with chocolate all over the pillow... more than once.
• you ask your son if his brother is out of the dishwasher yet! (Meant to say shower.)
• you’re making peanut butter cookies and just put the jar of peanut butter in the oven to bake.
• you use hair spray on your armpits and spray deodorant in your hair.
• you stop at a stop sign and wait for it to turn green.
• you find the Christmas presents you hid two years ago.
• you go get something from the fridge, leave your phone in the fridge and try to answer the ice cream pop when you hear something ring.
• you take the cordless phone and point it at the TV, and are so frustrated you cannot get your afternoon soap.
• you sit politely waiting at the pharmacy but they've already given you your purchases and have gone back to their other jobs.

the red thread

This is going to be a very short post, just an update on our baby situation.

To make a long story short, we are no longer trying to get pregnant. As it turned out, I simply couldn't handle being off of my fibromyalgia medications. My muscle relaxers, Advil, Excedrin, and trazedone (a sleeping medication commonly used to treat fibromyalgia) are all, without question, definitely verboten for anyone trying to get pregnant. And without them, I've wound up in one of the worst fibromyalgia flares in years. I've been in too much pain to function: unable to dress myself, drive the car, cook, get myself to class, type on the computer. So, after talking it over with my husband and my physician, the three of us made the decision that, for me, pregnancy is simply not an option. (If anyone has any doubts about whether or not fibromyalgia is a real, debilitating chronic pain syndrome, check out the mayo clinic website or web md.)

I feel as though I have lost an actual baby, not just the hope of one. I loved this sweet, precious little child, our little red-haired girl; she was planted firmly in my heart and mind, in my very being, and the grief of knowing that she will never come to exist is overwhelming right now.

But I know that I will survive this. And George and I KNOW that there is a child out there, waiting for us, waiting to become part of our family. In a funny way, being adopted myself, adoption, rather than pregnancy, seems like a normal way of becoming a family. So that is the plan.

I'm going to close with a quote I have propped up against my keyboard as I write; it was sent by a good friend when she and her husband adopted a little honey from China, and I have a feeling it's going to be my mantra for some time to come.

"An invisible red thread connects those who are destined to meet, regardless of time, place, or circumstance. The thread may stretch or tangle, but will never break."
--An ancient Chinese belief

Please keep us in your prayers, if you are so inclined.

i survived boot camp

HOW did it get to be July 23 already? This summer is going by so fast--too fast! I spent the first part of the summer at Chronic Pain Boot Camp. Well, technically, the correct name is The Chronic Pain Program (through the MAPS Pain Clinics), but it certainly felt more like boot camp: four hours a day of intensive physical therapy, support group and education around living with chronic pain, and relaxation therapy. I haven't moved so much in years, and everyday I came home and did nothing but veg out and sleep. Same thing on the weekends. Yet, to my surprise, I not only survived but am feeling and doing better than I have in years--a couple of weeks ago I actually went HIKING up at Gooseberry Falls, much to George's (and my) amazement!

The Pain Program is offered for patients who suffer from chronic pain which can't be cured, and the goal is to help patients learn to cope with their pain and return to living active, productive lives. I finally have tools to help me manage my fibromyalgia, back pain, migraines, etc., and, after so many years of feeling like pain victim, I feel as though I have my life back at long last. My only regret is that I didn't do this sooner--I would have if I'd known about it! Apparently, this type of program is the recommended treatment for fibromyalgia. Grrr. Oh well, I've told all of my doctors to recommend this to their other patients with fibro, so I hope other folks won't wind up going for years without any real help.

My goal now is to keep up with the gains I've made by keeping up with my exercise regimen, eating healthfully, getting enough sleep and practicing relaxation techniques. I'm also planning to do some volunteering at the Basilica and with the Obama campaign; I'm hoping I can parlay the latter into some kind of job doing grassroots organizing. Oh, and I also want to try my hand at doing some freelance writing.

I hope all of you will forgive me for being such a lousy friend over the last year or so. Looking back, I think my mom's death triggered a fibromyalgia relapse, and I've really struggled with both terrible pain and, even more, the frustration, anger, loneliness and grief that accompanied it. Still, that's an explanation, not an excuse. I hope my friends will, please, let me make it up to you in the future. :-)

april update

Well, I'm still on Vicodin, still having migraines every day, still not pregnant. My doctor is starting me on a three week course of steroids (maybe I'll wind up looking like Barry Bonds!) in hopes of ending my current migraine "cycle." He's also sending me to a pain clinic; they have a fibromyalgia clinic and a headache management program, as well as a chronic pain management program, so maybe they'll have something in their bag of tricks that will help. It's not as though my docs and I haven't tried plenty of methods over the years: various medications, physical therapy, trigger point injections, Botox injections (in my neck and shoulders, not my crows feet!), relaxation techniques, etc., etc., but I'm keeping an open mind and hoping for the best. At this point, I realize that I'm not going to find a cure, and I'm okay with that; my goal, rather, is to gather more coping techniques to help me live with the pain and, hopefully, function a bit better.

This winter seemed ENDLESS! My headaches were especially problematic for two reasons. One, because with migraines it's difficult to distract myself the same way I can with other types of pain. I'm so sensitive to light and sound that a good share of the time I'm stuck lying in bed, in the dark, and it's hard not to ruminate about the pain, about missing my mom, and other sad things. Two, several years ago I was diagnosed with Seasonal Affective Disorder, the "winter depression" also known by its highly apt acronym of SAD. I'm supposed to use a light box for about 40 minutes every morning, and I'm sure it would be very effective, if the bright light didn't invariably trigger a blinding migraine!

So, maybe it's cloudy and a bit dreary today, but I don't care. It's finally spring, baseball season is here, and once again I'm reminded how much I have to grateful for--right now I'm thinking of the caring and support of my family and friends, without whom I could never have made it through the winter. I hope you all realize just HOW MUCH it means to me to hear from you, whether it's by email, phone call, or comments here on my blog. Chronic illness and pain can be terribly isolating. There have been so many instances when I've felt so alone and been convinced I just can't go on one more day...and then I hear from one of you, and realize I can.

endless winter

The Topamax isn't helping yet, so my doctor has increased my dosage. The pain in my neck, shoulders, and upper back, combined with my daily migraines, is so bad that I'm on vicodin (sp?) every day now. All I do is sit in the house with the shades drawn (the light hurts my eyes), desperately wanting relief from the endless waves of pain, aching for a baby to hold, longing for my mom.

I wish spring would come, in the worst way.

still here

Yeah, I'm still alive. I've been having a lot of migraines lately, which is the main reason I haven't been posting. I have one right now, in fact, so I'll just post a brief update:

1. I'm having a rough time coping with my mom's death; I've been really isolating myself and immersing myself in books and TV to avoid dealing with my grief. Not healthy, I know, and of course I'm missing her more desperately than ever now that Christmas is coming.
2. No, I'm not pregnant yet.
3. I'm also having a major identity crisis since filling for disability with my student loan provider. How do I rise above my illness(es)? I refuse to allow my sense of self to be equated with my disabilities--I'm just not sure how I can define myself anymore. And it's painful to accept the loss of so many of my dreams. There are many days (like today) when I feel basically worthless, that life is passing me by and I'm not really living, that because I'm not bringing home a paycheck I'm not an equal partner in my marriage (although George never makes me feel this way), that I'm not contributing anything to the world around me.
4. I am doing one thing, though--George and I are participating in the Basilica's JustFaith program. Actually I'm a co-facilitator. More on this later.
5. Well, two things. I'm singing with the St. Paul Seminary School of Divinity Chorale again this year. When I manage to make it to practice, anyway. Our big holiday concert (Lessons and Carols for the Baptism of the Lord) is on January 6; we're also doing a hymnfest in April and singing at the Archdiocesan diaconate ordination in May.

However, regarding my mom, I came across a quote about grief today that gives me some hope:

Only people who are capable of loving strongly can also suffer great sorrow. But this same necessity of loving serves to counteract the grief and heals them.
--Tolstoy


If mom's death has taught me anything, it's that broken hearts never completely mend, but at the same time they become infinitely expandable and more capable of love and gratitude than ever.

one day too many

Here's a poem about the ups and downs of living with fibromyalgia:

One Day
Too Many
By Jane Bauhs


I am
one day
a blessing
then one day
I am a drain


Two days
a joy to know me
then two days with me
a strain


Three days
you'll see me happy,
then three days i'll
be in pain


Four days
of peaceful being,
bring four more of
useless blame


Five days
with me are blissful,
or filled with guilt
and shame


Six days
you'll see me active,
while six days could
make me lame


Seven days
you'll find me restful,
filled with a hope and
faithfilled fame


Eight days
you'll think you know me,
but its all been just
a game


Nine days
of me and then
you'll see we all
are just the same

my computer is back!!!!

Yay!!! My computer is back, after a major and horrendous CRASH which took some time to fix. Well, actually I've had it back for over a week, but I've been too wiped out to post anything. I am STILL wearing the neck brace (my boa constrictor) when I have to stand or sit upright for any length of time. I don't need to wear it as much, though. The pain is better than it was, although the knots in my neck and upper back are worse than ever, and are spending a lot of time raising hell. I'm finally off the vicodin and instead am taking a heavy duty muscle relaxer called soma, which certainly somatizes me (if that's not a word, it is now!) but doesn't seem to be unwinding my knots much.

The good news--yes, there is some--is that I'm now seeing a totally kick-ass physical therapist to deal with my chronic upper back and neck pain. I love her, I do, I want her to come and live with us. She's the first PT I've ever seen who actually GETS how much pain I'm in all of the time, and she's helped me understand the roots of the pain. Basically, the rod I have in my back from my scoliosis surgery, the scar tissue ditto, and the fact that I still have a significant degree of both scoliosis and kyphosis, all combine to make it impossible for my muscles to lengthen and stretch normally and force them into contorted positions, etc. Ow.

The other bad news--of course there's more--is that my asthma has been really nasty the last week or so. Apparently ragweed season is here, because my hayfever has kicked in full force, triggering my asthma. Fun. It's been bad enough that it's hard for me to move around, every time I do, I get short of breath and start gasping. Poor Fiona is getting TOTALLY freaked out, and is requiring much cuddling for reassurance.

If anyone has any prayers to spare, I could use some, I think. Also, I am very lonely, so phone calls are also welcome; I am always hesitant to call people I know who have things going on, (ie. everyone) because I know I'll call at the wrong time (a special gift of mine...) (Was that rude? I hope not, I've said that before, so I hope no one is offended.)

oh, the agony of it all...

I am in pain. Serious, awful pain. I got Botox shots in my neck and upper back a week ago last Thursday for something my neurologist calls "cervical dystonia" (sp?) which means, bascially, that the muscles in that area are permanently contracted and nothing will relax them. Which is true; I mean, I've seen I don't know how many physical therapists, gotten "trigger point injections" with lidocaine and cortisone, tried massage--nothing has helped. The muscles are excruciatingly tight and ropy, full of knots that make crunching sounds and feel like big pieces ofmoving gravel under my skin when you try to rub them. They are not only painful in themselves but cause lovely chronic migraines, too. This has been going on for several years, and is probably due to a combination of scoliosis and kyphosis and back surgeries; of course, fibromyalgia doesn't help either. Hence the Botox.
I am starting to wonder, though, if the cure isn't worse than the disease. I haven't been in this much pain since my back surgery, and I've dealt with A LOT of pain over the years. I have this strange feeling, as though I can't hold my head up, and I have to either wear a cervical collar (so I look like I have whiplash) or literally hold my head up with my hands whenever I get out of bed, which isn't very often. Moving around HURTS. It REALLY HURTS. My whole upper and middle back is one big mass of PAIN. I have been crying a lot from the pain, which I haven't done for years.

According to my doctor's partner, who I spoke to on Friday, this is not uncommon and will go away in the next week or so. The pain is because the super-tight muscles have been doing all the work of holding up my head and neck, so now the surrounding muscles are being overworked as they try to adjust to doing the work previously done by the now-Botoxed muscles. You wouldn't think something as simple as that could be so bloody painful. We'll see. I'm going back to bed with a couple of (medicinal) Hostess chocolate cupcakes and Anne Lamott's Traveling Mercies.